My journey
I have always been conscious that my legs were not as they should be. To me they always felt heavy and fat.
As a young teenager, most people put it down to lack of confidence.
Australia
It took a visit to Australia in 2005 for someone else to notice that there was something wrong. Most peoples legs swell during a long-haul flight. But within days, this usually returns to normal. Not in my case. After four weeks, my legs were still swollen.
But despite this, no doctor would acknowledge there was a problem. I went to see my doctor after my trip, to show my legs. He did the usual, cursory pressing of the skin to look for fluid retention, which there never is.
His response was to tell me that there was nothing wrong with my legs. His exact words, with a twinkle in his eye were, “They are very nice legs!”
I actually came away feeling a little “creeped out” by him. It didn’t feel an appropriate comment from a professional, even if it was meant as a compliment. But more importantly, I didn’t feel he was taking me seriously. He’s not my doctor any more.
Chiropodist
So, jump forward ten years, and finally a breakthrough.
I asked a chiropodist to take a look at a couple of unsightly nails. She asked if my legs were ok? “They appear are out of proportion to the rest of you”. I felt like I was in one of those movies where sound and vision grinds to a halt.
“What are you saying?” I asked.
“Your feet are very thin and tiny. And your waist narrows considerably. But your legs are completely out of proportion.”
Finally! Someone was seeing what I saw.
She suggested I get some compression hosiery. Like nurses use to help blood circulation when they are on the wards. But a nurse friend didn’t know what I was talking about. It took a chance comment in my pilates class to get things moving.
The husband of one of the group works in rehabilitation. She offered to speak to him about the hosiery. His response was to suggest that I might have *lymphedema.
After finding out what that was, I said that this was unlikely. As doctors had kept telling me, there was no evidence of fluid retention. But it gave me something to go on.
She said there was a lymphedema clinic at my local hospital, Addenbrooke’s. Could I get a referral?
Diagnosis – lymphedema
I went to see my (new and understanding) doctor to ask for an appointment. Two months later, I was at the clinic. Again, the cursory pressing of the skin. But this time: “Yes, you have lymphedema”.
I instantly perked up. “Great!” I said excitedly. “What happens now?”
“Oh, nothing. You can’t treat it and there are no clinics nearby. Bye”. And my two month wait for the appointment ended in a less than five minute consult.
My heart sank to my boots.
Arthur Rank Hospice
A month or so later, I went to visit a friend who had previously had breast cancer. I explained my diagnosis, and she reminded me that she also had lymphedema. In her arm. And she had attended the lymphedema clinic at Arthur Rank Hospice during her treatment.
“But that clinic is just for cancer patients,” I said, dejectedly.
“No it’s not,” she smiled. “It’s for everyone!”
Time for a Snoopy happy dance!
I called the clinic the next morning and sure enough, all I needed was a referral. I called my doctor and the referral was sent.
A few short weeks later, I was sitting in the clinic for my first appointment.
Diagnosis – Lipodema
A dedicated examination identified that I didn’t have lymphedema, but lipodema*. And that I would now officially be on their books to treat it.
I was beyond elated. Not only was something listening to me. They were going to treat me.
What followed was a year of treatments:
- made-to-measure hosiery
- manual leg drainage sessions
- mechanical leg drainage sessions
- regular measurements
- dietary suggestions
From this, I have bought my own mechanical drainage kit. And an oscillating power plate, both of which help me to control and manage my condition.
As a result, after 13 weeks of lockdown, my weight and leg size remain the same. This despite being far less active than I would be normally at work.
My condition is not curable. It is unlikely to ever get better. But by being educated on the condition and having tools at hand to treat them, I hope my legs will not get worse as I get older.
Useful Information
Definitions
*Lymphoedema is a long-term (chronic) condition that causes swelling in the body’s tissues. It develops when the lymphatic system does not work properly. The lymphatic system is a network of channels and glands throughout the body that helps fight infection and remove excess fluid.
**Lipoedema is a long-term (chronic) condition where there’s an abnormal build-up of fat cells in the legs, thighs and buttocks, and sometimes in the arms. The condition usually only affects women, although in rare cases it can also affect men.
Further reading and videos
A selection of articles and videos which you may find interesting about people who live with Lipdema:
Ketogenic solution for lymphatic disorders – I don’t advocate any diets to assist with lipodema symptoms, but I do know from personal experience that cutting down on carbs really helped with swelling and the heavy feeling in my legs.
Lipodema – Lorna’s Story (BBC Website)
A woman’s lifelong struggle with the debilitating fat disorder lipoedema. At last offered treatment, her hopes for surgery are dashed by Covid-19.
Sorry, I can only find the Welsh version but it has subtitles.
https://www.bbc.co.uk/programmes/m000r1v5 or on YouTube
Clothing
One of the most annoying aspects if lipodema is finding clothes that fit. With a top half 2 sizes in difference to my bottom half, wider legs and ankles, clothes buying can be quite soul destroying. A few things I’ve found below may be of use to you:
Tunic tops
I have found lately that tunic tops help to hide the size discrepency between top and bottom of my person. Retailers: Yours and Susan Julie.
Boots and shoes
I love my boots from Cozyfeet. They aren’t cheap but they are excellent quality. I have had the Moose boots and Megan boots. Bought 4 years ago, they are still going strong and as waterproof as when I first bought them. What I love is they are extra wide both in the shoe and the ankle area. And they look stylish.
It helps to clean the Megan boots regularly with nubuck cleaner. The trick is to clean as follows
Cleaning nubuck shoes and boots
- Brush with a nubuck brush (not a suade brush, its too course and will damage the nubuck material)
- Spray with nubuck cleaner
- Rub and clean with a clean cloth
- Spray with waterproofing spray
- Brush gently with the nubuck brush
Trainer shoes
I was recommended Brookes trainers by a podiatrist following a back operation. I usually find the mens trainers work better for me than the ladies. I have to wear specially made insoles and the mens shoes are wider to accommodate.
In the options down the side of the website you can pick size, width and comfort. I need cushion or max support. They feel like floating on air. I have also bought them for my husband who has knee trouble. They make a world of difference to his gait and walking distance.
Socks
Another trial is finding socks that fit. Most socks are too tight round my leg. However, for summer I have found the Gentle Grip range work beautifully. TK Maxx often sell them.
For winter socks, I found the Wool Blend Boot Non Elastic Socks from Ebay are wonderful.
If you need compression for your lower legs during exercise or working on your feet all day, I find the Karrimor compression sock for men work. Sports Direct sell them.
You need to wash them after every use, otherwise the compression is lost.
Teacup Therapy 